All By Myself

Paxton was up every three hours last night. He had difficulty getting comfortable and falling asleep despite being given oxycodone. The solution to the problem was Susanne holding him in her arms for hours on end. He always seemed to feel right at home in the crease of her arm. They rocked the night away together.

Moppy headed over to the hospital in the morning. She watched all of Susanne's belongings while she took Paxton to get an x-ray of his chest. Since he was a patient that was in the hospital, they got in and out of there. Susanne had to constantly request the appropriate amount of personal protective equipment for herself during the x-rays. It was amazing how they didn't follow the same standards of care that was required in veterinary medicine. As long as Susanne could remember, she had never been offered anything more than the lead apron. In reality, she should also have a thyroid shield and lead gloves. She felt bad for all of those parents who routinely assisted with their child getting radiographs taken that had not been properly educated on what really happened when one was being taken. Radiation accumulates over time and if their child needed as many radiographs as Paxton had in his lifetime thus far...there was enough room for concern.

Paxton had a consult with a neurologist today. The doctor wanted to assess him so that the neurology team could put the clinical picture together and try to interpret the brain MRI results from a couple of weeks ago. After they had time to put all of the information together, they reiterated their concern for an underlying genetic problem. They were aware that all of the previous genetics tests had come back within normal limits, but they were almost certain that there was something that had caused both the Pierre Robin Sequence and Ebstein's Anomaly to occur simultaneously...they just couldn't put their finger on it. The likelihood that two rare conditions were isolated events was difficult for them to believe. They could not think of any other diagnostic test to run to try to determine what the cause might be. They even mentioned that it might be a genetic problem that hadn't been discovered yet. So it wasn't too far fetched to think that there may actually be something called Paxton syndrome in the future. Needless to say, the results from the brain MRI revealed that he had thinning of the tissue that connects the right and left side of the brain which allows them to communicate and coordinate together. Also, there was a marked loss of white matter, which was one of the tissues that compose the central nervous system that was responsible for the communication between the grey matter regions of the brain and the rest of the body. They even noticed evidence of previous hemorrhage. The thought was that this may have occurred during his previous heart surgery when he was one month old, but they couldn't confirm it. All in all, they did not know what these results would mean for his future. They could not confirm whether he would have developmental issues as an adult or if he would be able to catch up at some point. It was so frustrating that there were still so many unanswered questions whether it had to do with his brain, his heart, or even whether he had a genetic disorder or not.

Moppy got to hold Paxton one more time before she had to head over to the airport. Her flight was later that evening, which was nice becaue she got to visit with Paxton all day. After today, Susanne would be all by herself until Paxton was discharged. Everyone would be missed greatly.